COLUMBUS, Ohio — For those with ALS, access to clinical trial drugs can be the difference between life and death.
That’s why Becky Rottier continues to push for more funding at the federal level.
“There are a couple really good ones out there now that are helping slow progression,” said Rottier. “It’s not a cure, but it could be a bridge so we can make it to a cure.”
Rottier was diagnosed with ALS on Oct. 17, 2018.
“I’d be walking around in the grass and my ankle would give out and I would turn and fall.”
Three years later, her progression has been slow.
It’s part of the reason why she’s not eligible for any ALS clinical trial drugs, which is why she’s teamed up with ALS advocates, like Michelle Alverez, to push for legislation in Congress.
“We had the ice bucket challenge that raised a lot of money,” said Alverez. “But that money is going to research to help people a decade from now. There hasn’t been any money to help the people who are fighting for their lives today.”
Lorenz said U.S. House Bill 3537 and U.S. Senate Bill 1813 work to provide funding for people with ALS to help cover the cost of clinical trial drugs.
With more than 300 bipartisan cosponsors, HR 3537 has strong support. In the Senate, the bill has only 16 cosponsors.
“We’re just getting started in the Senate,” she said.
That’s why Rottier said she will continue to push.
“I will just keep calling, keep emailing, keep talking, get my story out there,” said Rottier. “And I’m just going to keep bugging them.”
Ohio’s senators, Sherrod Brown and Rob Portman, have not yet sponsored S.1813.
Spectrum News 1 reached out to both for comment. Sen. Brown’s team said he is actively reviewing the bill.
